A window into pain: American Indian cancer survivors’ drawings

Abstract

In order to explore the cultural constructs of pain, a series of focus groups were held among adult American Indian (AI) cancer survivors and their caregivers in the Southwest USA. Thirteen focus groups held at four sites (reservation, urban setting, hospital and clinic) elicited information on the barriers to cancer pain management. In response to facilitator questions about cancer pain and existing measurement scales, participants drew pictures to better explain their pain type (i.e., "pounding"), intensity (i.e., "spider web-like"), and other more abstract aspects of their pain episodes. Noting this novel outlet, subsequent groups were prompted for illustrations of pain. A total of 17 drawings were collected from focus group participants. We discuss seven of the drawings that best opened a window into the lived experience of pain, reflected through the eyes of cancer survivors. This study provides evidence that self-expression through color, imagery and written personal accounts provides more accurate depictions of pain for Southwest AI cancer survivors than pain scales alone. It is hypothesized that cultural modes of communication (i.e., storytelling) and intergenerational influences of artwork led to the depiction of pain in drawings. Suggestions for further exploration of the use of the pain drawings for pain assessment in healthcare settings are included.